Starting Chemo April 2016
I am PILC triple negative and am starting chemo on 8th April with AC 4 monthly cycles with 3 weeks in between, then 12 once a week cycles of Taxol. I am getting nervous and would like to share my experience with someone else starting chemo in April. I will be doing rads after that.
CJ Sharma 31st March2016 AC+T
OnceOnce 31st March2016 TC
Jovichick83 31st March 2016 TCHP
Bagger 1st April 2016 TCHP
Araven 1st April 2016 AC+T
1Uniboob1 1st April 2016 AC+T
PediGG 4th April 2016 AC+T
TotallyTubu 4th April 2016 CMF
BilliardMam 4th April 2016 TCH
Blommom74 6th April 2016 TAC
Positive Pow 6th April 2016 TCHP
Limnogal 6th April 2016 CT
LacrosseMom 7th April 2016
7of9 7th April 2016 Taxotere x 4
Cody_mx 7th April 2016 Taxotere and Cytoxan
Kidsid22 7th April 2016 TCH
Numb 8th April 2016 AC+T
Rroses 8th April 2016 TCHP
Agharta 8th April 2016 AC+H
Katjadvm 8th April 2016 AC+T
Njr426 11th April 2016 AC+T
jgab 11th April 2016 carbo/docetaxel/perjeta/herceptin
Pdrchick 11th April 2016 TCHP
Suems 11th April 2016 MMM
Junebug57 11th April 2016 Taxol
Createyouro.. 12th April 2016 AC + T
Wellshoot 12th April 2016
Gracietoo 13th April 2016 AC + T
Anniekaja11 14th April 2016 TCH + H
MattieFang 14th April 2016 Abraxane (type of Taxol)
Juskym11 14th April 2016
Houston2016 14th April 2016 AC
TRBAllenTX 14th Aoril 2016 Carboplatin (Paraplatin), Taxotere (docetaxel)
VSB2015 15th April 2016 TC
Twaz 19th April 2016
Kristi525 20th April 2016 AC + T
Mellie361 21st April 2016 AC + T
Sfar 21st April 2016
MrsY 22nd April 2016
Pupquilt 25th April 2016 HCT
Njnancy 25th April 2016 AC+T
SheriCT 25th April 2016
Mizzoh 26th April 2016 Taxol + H
Hikerchic 26th April 2016 AFC
WeRwarriors 27th April 2016 AC + T WeRwarrior's Mom
SusanBP 27th April 2016 T + AC Herceptin and Perjeta
Heidi16 27th April 2016 TCH
DesiWyatt 27th april 2016 AC
Jib2016 28th April 2016
4Hymn 28th April 2016 AC
Bimsickle 28th April 2016 AC + T
Nysa 28th April 2016 TC
Zoziana 29th April 2016 Taxol and Herceptin
NWKgoldfinch 29th April 2016 AC
Comments
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Dear Numb and other April 16 chemo group,
Greetings from the April 15 women! You may find this thread and group of people your most important, long-term resource for chemo and life beyond.
You can do this--and we will drop in to cheer you on and answer questions if we can.
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I am full of hope that I will be able to manage this chemo with little side effects. Am I being over optimistic ? Is there anyone out there who didn't have a terrible time on chemo, who could give me some encouragement.
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I didn't have a very hard time of chemo. It was time-consuming and took a lot of tracking but wasn't too bad. I didn't have trouble tolerating the treatment.
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Thank you ksusan, there doesn't seem to be many people who will say that on this site, so maybe the people who have no problems just get on with their lives and don't bother looking up the net and posting on sites like this. While I am prepared for some side effects, I just hope that I am not overwhelmed by any of them. One day I am feeling very confident and then I go and read that someone else can't cope with the treatment and I am back to worrying again. Hope to hear from more people who could cope with ACT
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Hi Numb, I hope that others will join you here soon. These monthly groups can be very helpful (mine was May 2015). Count me in as someone who also tolerated chemo well. Fun it wasn't, but it was manageable. You'll do fine, and there is a lot of support here!
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Hi Numb...I'm also from the April '15 chemo group. I had the same protocol that you're having (except Herceptin with Taxol since I'm HER2+). Before I started, I pictured myself so sick that I couldn't function, but that was not the case. I had some rough days, but had more good days than bad ones. On AC, the first few days were hardest, but by week 2 I felt pretty normal. A local friend was also on AC when I was....she took her treatments on Friday afternoon, and by Monday she was fine to go back to work. I think you're right in that those who don't have many issues with SE may not post as often.....either they don't feel the need to, or feel guilty posting about how well they're doing after reading what others are experiencing. What I found in our group is treatment may affect us all in different ways, and no two MO's handle everything the same!
Soon other April '16 ladies will join you here I bet. I wish you all the best! Next thing you know, you'll be supporting an April '17 group!
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Thank you rainnyc and GingerChi for posting. I could do with people like you. I know that most of the people here are going through a lot and like to vent and get support and that is understandable, but I think if we had more people posting how well they are doing it would help the people still waiting for treatment and also give hope to the people going through a hard time that their luck could change in the weeks to come.
Good stories make a person feel good while bad news doesn't help anyone except maybe when the person posting the bad news gets help. I could be one of these people after I start my treatment, and if I am I will be as grateful as they are for the support received here..
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I also had more good days than bad. The bad were made worse by migraines, which isn't going to happen to everyone (but I am prone to them). I don't want to go through it again, but it is manageable. Stay well hydrated and try to move/exercise every day. I think those things can really help tell your body to recover.
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It feels good to have a place to come where others "get it". I found that every SE I had, someone else here had as well, and that is comforting. You can find lots of tips on how to deal with various SE's..... for me that was such a help!
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Hello to all
Numb, I did dose dense (every two weeks AC) and and now on dose dense taxol, finishing up April 18. Though I had a terrible reaction to my first AC, was hospitalized etc, I tolerated AC very well. A bad few days afterwards but definitely manageable. Tips from others and on older chemo threads helped a lot. I didn't get a lot of SE's after they managed my nausea with medications. The key for me is hydration. You may feel like you are drinking too much water, but I flushed that stuff out.
Also, no side effect is too small. Let your MO know immediately. They have a ton of things in their arsenal to help you. Don't minimize it when you see them, they can help.
I was prepared for all the se's, but other than headaches and some other mild issues, it was definitely something you can handle. On Taxol, I got a few but it's been the kindest so far.
The best thing in my humble opinion is to have a positive outlook. This too shall pass. And it does. Check out the Jan chemo thread. Lots of tips on there. And others.
Val
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Hi, Numb. You will see some threads that are devoted to doing well (with surgery, chemo, radiation, hormone therapy, reconstruction...) but as you say, many people seek out a site, or post, because something is difficult or uncomfortable. Like therapy--people don't start therapy to talk about how well everything's going, so therapists can get a distorted picture of their community over time if they forget that most people aren't coming to therapy.
Neither my mother nor sister has used this site; they did their treatment and don't want to talk about it. My sister asked me questions since I'd already been through it, and she mostly did what her docs told her to.
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thanks you Val and ksusan. My MO told me not to look up the net on chemo, that anyone who is doing well doesn't feel a need to post about their experience, so hopefully that is the case. I am the sort of person though that would like to be prepared should I come up against any unbearable side effects and somehow when you see someone else has the same side effect and it is normal it doesn't feel as bad .
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Hello ladies! My name is Gwen and I was an avid user here in 2012 and 2013 when I was going through surgery, chemo and radiation. I was thinking about it this morning and felt inclined to visit the board and go to the next chemo group which is you ladies. Yesterday I returned from a trip to Hong Kong and Vietnam. I went with a friend and we visited another friend. My travel friend picked up a cold a few days before we left and is now home sick and wiped out. I however feel fantastic. I just realized I haven't been sick with a cold or flu once since going through treatment. Maybe just maybe that while chemo lowersyour immunity it also strengthens your body so that by the time you are done you are this little germ fighting power house! I like to think it's like I got an oil change for the body! Anyway I want you all to know that the vast majority of you will absolutely get through this and come out physically, mentally, and spiritually stronger. While you are in the throws of treatment do a couple things to lift your spirits. Plan a trip for after treatment is over. Plan a weekend get away during treatment or in between chemo and radiation if that's on the schedule. Go out to lunch with your friend that you love but don't see enough. After the first few minutes answering her questions about how you are doing you will move on to fun topics, gossip, whatever, and you'll leave lunch feeling empowered. Yeah this is a challenging time but in the scheme of life it's just one of those damn times when life presents a hiccup. I worked all through chemo and radiation without any problems. I think I took a sick day the Monday after my final chemo but that was about it. I cut my hair into a cute pixie around the time of my first treatment. Sure enough about three weeks later it started falling out so I had my husband shave my head and I rocked an adorable wig with the most beautiful highlights I ever had! Getting ready in the morning took so little time not having to do my hair! From the time I was diagnosed until my last treatment day was 9 months. I sort of looked at the process like a pregnancy. It has its ups and downs but in the end it's all worth it. And like a pregnancy you tend to forget any of the difficulties and simply give thanks to this little miracle you hold. The difference is this little miracle is not a baby but healthy you! You got this! All my best to each of you, FriendGwen
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Thanks FriendGwen, that made for great reading. This topic is beginning to sound a lot more positive and I am grateful for that.
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Numb, this site is better than many for a more balanced picture of the whole thing. I agree, though, that a person can frighten herself terribly, so it's good to ask questions.
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Numb, just want to chime in with the others. Yes this site gives a much more up to date balanced view. Some hate it when you say stay off the internet. I've learned the hard way to find a few trusted places and leave the rest alone. There is a great thread on here, called "What I didn't know about Breast Cancer" It was an eye opener for me.
Also, it won't all be positive because Cancer is a negative, but we can only control how we react. The rest is in the medicine and our bodies reaction to it. That is s why venting and listing side effects helps sometimes, as you don't feel alone, and others have been there and they have tips to get you through. Especially here.
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Thank you Val for posting this message. I have come to the realization that this site is great for anyone who has a problem both with diagnosis and treatment and it is great to have such a place to get information. I think though that it can be very disheartening for people like me who haven't really started the journey yet, being just diagnosed and had a lumpectomy, and so far no real problems. You hit the nail on the head when you said you found out the hard way to leave a lot of the topics alone. I am beginning to come to this conclusion too. Yes, I have looked at that site "What I didn't know about breast cancer" and while it is very informative I found it to be depressing, just because if I read something positive somewhere about breast cancer then that particular site seemed to have someone whom it didn't work for them. I suppose I have inner hopes that I will pull through just because my breast cancer was caught early, but then I read there that early diagnosis doesn't always mean your treatment will work. So this kind of thing puts me back to square one with worry. I find that particular site more of a worry than a comfort although I know there are people out there who love it.
I realize that it can't be all positive with cancer but I just wish there were a lot more positive posts. I really do see how the site helps people who need advice, and I might be one of these people soon, but at the moment I feel bogged down by negative thoughts wondering will the problems of others be mine soon and it makes me worry in advance.
I think the bottom line is people who have a problem seek help, but the people who don't have problems carry on with their lives and don't seek out sites like this. I have come to the conclusion that at the moment I am better off not reading all the topics on this site, until I have to get advice on something. I thought when joining this site I would feel better about my diagnosis but unfortunately I feel worse and this is not the fault of the site, but my own fault for trying to be one step ahead of any problems I might have in the future. Now I know why my surgeon told me not to read up about my case.
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Numb, you might want to focus on threads that are positive--there are some exercise threads, for example.
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thanks Ksusan, I have worked myself into a frenzy with worry, going for counselling tomorrow. I think I spend too much time looking things up here and then getting all worked up thinking of others' problems.
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That frenzy is familiar to all of us. I find it very helpful to put away the internet, go for a walk, and focus on my senses.
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Numb - first time around I breezed yes breezed through AC & T. No puking. Little neuropothy (sp?) no sores or missing fingernails. nada. I had so much nervous energy I painted the bathroom, front porch and stained the patio. Built two flower beds with small pavers. Walked. Watched Planet Earth series on DVDs husband got for me. Sewed (who me? yes me sewed!)
DO: Avoid crowds, (I am planning on avoiding people and going fishing with my husband) get exercise, get a hobby if you don't have one to do during idle time - helps with nerves and keeps your mind from wandering. Ask for nausea meds and oxy or whatever they prescribe for neuropathy so it doesn't slow your exercise down even if just walking. Also get lots of those clorox wipes and you or someone in your house wipe down door handles, appliances, remotes and phones daily.
Hair loss sucks but it doesn't hurt.
Seriously, I am dreading another round only because I don't think there is any way I can be that lucky again - though this will be short - just 4 of Taxotere or 6 of Xeloda. Pick your poison... Will know March 31. We can do this!
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numb - don't forget the attivan for those moments when the panic rears up. It will lessen and become almost controllable. One day at a time.
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that's good advice kSusan, I will have to put away the internet as it has contributed to a lot of my anxiety. Thanks for keeping this thread going.
Wow 7of9 you are so good to post your experience, I already feel better and I wish you well on your next treatment.
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Numb, more people in your shoes will be joining you as we get closer to April. Meanwhile, you might find it more helpful to read some of the previous chemo "month" threads because you'll see people talking about a range of experiences (whereas chemo "topic" threads tend to be about fears or things going wrong). If you haven't already, you might want to check in on the March 2016 chemo thread since they're the people just a few weeks ahead of you. I had my initial visit with my MO in March, so I joined both the March and April 2016 chemo groups.
If necessary, block threads that scare you. When I first joined, there was a thread I kept going back to that wasn't even relevant to me and that scared me terribly. Blocking it took it off the table, and I know that if it does become relevant, I can unblock it.
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thanks again kSusan. Isn't it funny that we keep reading posts we know are not going to do us any good. I keep on saying I will give up the net but every day I check in. Finding something positive makes it worthwhile. I even bought a new pair of pyjamas yesterday for going into hospital again, and my husband looked at me in dismay saying that I have already had my lumpectomy and what makes me think I am going to hospital again !!! I just can't get it out of my head that hospital will be my life from now on.
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If it helps, most of us in March/April 2015 have not been back to the hospital except for a few ED visits and planned overnights related to reconstruction. There have been a couple who've had to go in for IV antibiotics, but the number is low.
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thanks kSusan, I went for counselling today and among other things was told to stay off the internet because none of us know the background health wise of anyone we read about and they could have problems with treatment due to other health issues that we know nothing about. I also do not live in the States so a lot of the treatment you get over there is not the same as the treatment we get here, so it is hard to compare ourselves. We don't have the Neulasta shot the day after chemo for example.
So I felt much better after this counselling and I think I will forget about the net, for the time being anyway. I might just read the March 2016 chemo group as you suggested though.
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Numb, it sounds like your counselor gave you some good ideas. As you move forward in this process, I'm betting you'll find that each time you start a new part of it, you'll be anxious beforehand and more relaxed once you've actually done it yourself.
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April 2016 gals, Sorry you find yourself here, but I encourage you all to stop by this forum often. You will find a great group of women to help you through the bad days and celebrate the good days. They will understand like no one else in the world can, because you're going through it together! I started the April 2015 group. I had an advantage (can you call it that???) in that it was my second time going through, so I knew the tips and tricks that worked for me. As a result of that (and some luck), I had a relatively easy time with chemo, even doing a half marathon partway through (notice I said doing one…not running one…I ran half and walked half, which is how I trained. It gave me a focus besides just chemo).
Here are some thing that helped me:
1.Be sure to clearly communicate to the oncologist. They have tons of things to help with about every side effect. You just need to let them know what is and is not working. They can't help you if they don't know.
2.Do what works to deal with the digestive issues. They gave meds in my premed infusion which lasted for 3 days and worked. With AC, my oncologist told me to take Zofran every 8 hours for 5 days and not to get behind. I set my phone alarm. It worked well. No vomiting and very little nausea. I also had meds on hand for both diarrhea and constipation since people seem to trend one way or the other. I had heartburn too and Zantac helped a lot. My oncologist warned me that AC and the anti nausea meds cause severe constipation. He told me to stay ahead of it. He was right and I am SOOOO glad he warned me. The first round I just took stool softeners…not enough! All the others I took the max dose on the stool softeners, ate prunes, ate food which normally cause me diarrhea and occasionally took another laxative. I had no further problems.
3.Eat what tastes good. Some chemo alters taste. Mine did, and everything tasted like pond water for a couple days. I ate what I could. Kind of like pregnancy…eat what you can when you can. Luckily for me, fruits and veggies tasted good.
4.Hydrate, hydrate, hydrate……drink what you can…however you can…it is one of the best way to help clear the chemo out and help you feel better. It varied round to round what I would drink. Decaf tea, ice water, lemon water, slushies, Gatorade, Lifewater, soup broth, smoothies, watermelon, etc. I took Gatorades, poured them into other containers and froze them for a while…instant slushie.
5.***This was key*** Keep a journal. I wrote a sentence or 2 on my iPad each day. I just labeled it Day 1, date, and wrote a sentence or 2 about what I felt each day as far as symptoms. This really helped when I went to my appointments. It also really helped round to round. The symptoms are really very similar each round, but you get better at figuring out how to manage them. You think you'll remember, but I would have something and think I'd never had it before and look back and see sure enough…day 3 was the same last time. Just like pregnancy, you block out the worst parts very quickly. It really did help also being able to look back and know that even though I may have felt crappy one day, I knew that in 2 days I would feel better and be back to normal. The only symptom that is cumulative is fatigue, which is mostly because of blood counts taking a bigger hit each time.
6.If you get Neulasta, about 50% of people have no side effects. About 50% have crushing bone pain. My MO had me take Claritan to prevent the pain and it worked for me.
7.People want to help. They really do. Let someone set up a meal train for you. If someone says "what can I do?" …give them a task…about a half hour task…come and vacuum my main floor,…come and help me fold a load or 2 of laundry…keep the task small…you will appreciate the short visit, you will appreciate help with the housework, and your friend will feel great for helping. I also had an "on call" person for meals. I had one person who said if I was ever admitted, she would cook a meal for us. I did this after my meal train filled up; I just used the meal train for a couple days the first week after each chemo. When I was admitted during TC chemo because my counts fell and I spiked a temp, it was so nice to have that go-to person for a meal for my family. I am sure you have helped people in situations like you are in and you will have years to afterwards. People want to help you. It is hard to accept help, but it really will help you focus on getting healthy and taking care of your family…and that is what is important now. I had one round where I felt really good and called the person on the meal train and told her she did not need to bring a meal. She said, "Karen, you don't get it. I WANT to bring your family a meal…whether you need it or not." I enjoyed her meal, and took her statement to heart.
8.Studies that randomize people into exercise and non exercise groups have proven that exercise helps decrease side effects. Walking or running everyday with my trusty tunes playing was a sanity saver for me. Even on my crappiest days, walking helped me a lot…physically and mentally. On good days, I went for long walks. On days when I was more tired the walks were much shorter. Anything is better than nothing. Do what you like. Just do something if you are able.
9.Once your nose hairs fall out, your nose will run more (annoying), so keep tissues in pockets and in the car too
10.To prevent mouth sores with AC... Chew ice and suck on popsicles for 5 minutes before, all during, and 5-10 minutes after the "A" push.
11.Keep your oncologist up to date on how you are feeling. Do NOT let him/her minimize things. If something is not helping, ask for something different. Luckily now, there are ways to combat almost everything. My MO first time around minimized everything which landed me in the hospital. He was NOT my MO for very long. My second MO is fabulous!!!!!!!
12.In about a month you'll have hot flashes thanks to chemopause. Dress in layers and always keep a bottle of ICE water with you. It'll break the hot flash quickly.
PM me anytime with any questions. I've done both AC+T and TC. You also can pop onto the April 2015 board anytime to ask us questions. I know several others will pop in to give tips and encouragement as well. We're a very close group and still check back often.
You CAN do this!!!!!!!
Karen
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Kbeee is our fearless leader in April '15. I will add:
- If you're thinking you want an antidepressant and you're ER+, talk with your MO about Effexor (because if you are going to take Tamoxifen, you're likely to get switched to Effexor anyway).
- Many people have annoying but manageable responses to these interventions and do well through treatment. Remember that many people only post the problems they're having, which can give a pretty distorted view of the experience.
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